Hi all
Well what a journey. Its a long story so i will cut it down some.
The trial drug i was on for pbc had me awake for almost a week due to relentless itching on soles of feet and hands. Inbetween seeing the liver doc i had to go to gp, given anitbiotics due to chest, eye and nasal infection. On top of this had a tooth extracted due to immense pain in face and tooth area, turns out it was fused to the bone and some of the bone came out with tooth that had decayed.
I have had to stop drug and withdraw from trial, i have apt on Monday to be discharged. I feel disappointed, i wanted to get through this trial, but i have a job, family and house to look after, cant do it without sleep.
On Wednesday just gone i had apt to see sjogrens doc, what he is on!! i feel he made his decision before i sat down, (middle aged woman, hormonal, depressed) Now i have relatives with depression so i know for sure its not what i am suffereing. The fatigue is probably sjogrens/ liver disease let alone thyroid disorder. But he kept swinging back to depression, he also said i am doing very well considering other people have bad joint pain, i agreed i am blessed with not having to suffer like others do in that respect, but i am constantly tired.
But i am struggling with being worn out, and in regular pain, shooting, stabbing pain across my cheek bone and jaw, even my ear canal. This doc said it could be TN and mentioned being referred to neuroligist,i kind of stopped listening to him, his manner was very disruptive. i also have thinning bones, im only 43yrs.
Sorry its a long vent - but this is the stage im at, i do have low moods but then what does he expect having to deal with all types of pain and issues on a daily basis.
I should be starting on Urso when i get an apt again.
Thanks for letting me share.
TAke care
Loulou
Hi Loulou
Time for a new doc?
I'm sorry you had to come off the trial you were on. What are they going to do instead? Is there a current treatment? It might be an idea to see a neurologist. A neurologist may even be able to recommend someone else who wouldn't be so dismissive of fatigue etc! The one you saw sounds as though he doesn't have a clue what fatigue feels like.
Take care - Scottie :)
I'd look into seeing a neurologist for TN. It's very painful and Tegretol can help.
Sorry you had to withdraw from the trial.
Hoping for better night's sleep. That makes a big difference, I know.
Karin
Awww, LouLou. What a shame you had to stop the trial, but hey you must come first..
You certainly won't cope with anything if you don't get your sleep!
You need your strength to get over all your complaints..
It was very brave of you to attempt the trials when you were so ill.
I ope the TM gets over soon, it doesen't sound nice at all.
Vent away, we will listen and comfort . Hugs Dolly x
Thankyou for your replies.
Scottie - after being discharged from liver trial, they should arrange an apt to start me on the standard med of Urso. It took 3 attempts on this trial, and i feel i was spiralling downwards in health, it was probably to do with lack of sleep. Still suffereing terribly with the intense pain of the face and ear, jaw area, i also noticed strange sensations after the attacks. How you doing, i hope your well.
Karin - I hope there is something that can help with the TN, it can be quite intense. I will look into tegretol and mention it to gp.
Dolly - thankyou also for your kind words. I am hoping the little bit i did was enough for them to make results or solutions with the drug. The liver doc was saying that patients who had such reactions, did better on the drug, but the remedies just didn't help the itch.
Thank you all and hope you take care.
Loulou